Treatment Strategy

A month ago I had the tumor removed with a procedure based on the thought that it was benign. From recent discussions, this was fine and should be considered a massive biopsy.

For now my treatment will involve three stages...

1. Radiation
2. Additional surgery
3. Chemotherapy

Radiation will begin on June 1st and will be for five weeks. This will involve a two 30 second treatments per visit Monday through Friday. Side effects should be minimal but might include some small burning and/or swelling. Tequila induced arm wrestling might be off the agenda for good. They are only putting radiation through the front half of my arm so if there are any complications with the circulatory or lymphatic systems, the top of my arm should remain normal.

Additional Surgery will take place a few weeks after that after any needed healing has taken place. From my second opinion visit to Memorial Sloan Kettering Cancer Center on Tuesday, I learned that they would have a similar treatment strategy, but they also had one of two surgical oncologists in the country who specializes in hands. This will probably be the doctor I will use to remove the "residual tumor bed" including the existing scar from the original surgery. Obviously, risks here include loss of strength and feeling in my hand from removing muscles and nerves. 10 to 15 years ago, the standard procedure would have been to lop off the whole arm.

Chemotherapy will begin after the second surgery. It will involve ifosfomide and doxorubicin. DUMC doctors were leaning this direction and MSKCC adamantly pushed for it. This will involve a six month period of chemo with all the crappy stereotypical side effects you hear about. My only concern here is from a bad experience in the bathroom of the Junkyard with some barber clippers in college, I don't think I'm gonna be too thrilled with my new look. Potential long term side effects closely resemble those I faced attending college for four years and living with my cronies two years out of school.

If you have any questions or information you'd like to share after reading this, please let me know. Thanks again for all your support. All the doctors agree that with this aggressive treatments strategy, my prognosis is very positive. My attitude will resemble that.

What the hell is going on...?

About a month ago, I was diagnosed with a Malignant Peripheral Nerve Sheath Tumor with Focal Rhabdomyoblastic Differentiation. The preferred couch name is a Triton Tumor. It's an odd one with components from two types of cancer but acts and is treated like the MPNST. The family of tumor this falls into is Sarcoma, or cancer of the soft tissue.

Here is a rough timeline of events so far...

Early March: Visit a hand specialist in Raleigh to try to figure out what this weird bulge in my arm is doing there. Just noticed the bulge and figured it's nothing to worry about.

Mid March: Get an MRI on my arm thinking it is most likely some injury from sports and/or aggressive partying. Get a call from radiologist that day. He's a concerned of it being a tumor.

Late March: After radiologist not very excited with what he saw. I'm referred to the oncoloy clinic at Duke University Medical Center to meet with their chief surgeon. The chief surgeon and their radiologist review me and my MRI and tell me to relax. They're 90% sure it's benign. Surgery was scheduled for late April.

Late April: After a relaxing trip to Jamaica, I shaved off my moustache and went back to Duke to have the tumor removed. After the surgery, I learned that it went well and the tumor wasn't growing out of the main nerve that controls my hand. Pathology should be complete in 10 days.

Early May: My doctor calls me to let me know the pathologist isn't liking what she's seeing. It's taking longer to ID the tumor than expected, but most likely, she's going to call it malignant.

Mid May: Go back to have the stitches removed. No new news yet. Discuss probability of Sarcoma and Lymphoma. Doctors schedule me for Bone Scan and Chest CT Scan. Churchill's here I come...

5/15/06 Get call on final pathology. Triton Tumor.

5/17/06 Have scans done as described earlier.

5/18/06 Results in. No evidence of cancer having spread to lungs and bone at this time.

At this point it looks like I'm going to undergo radiation therapy, additional surgery, and potentially chemotherapy. After a second opinion at Sloan Kettering in New York yesterday, I'm almost positive this will be the plan of attack.

I'll keep everyone posted with second opinion details, treatment details, and updates on how everything is going. Thanks for your support.